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leiomyosarcoma leiomyosarcoma

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Unread 02-10-2004, 11:37 AM


I can't follow - were you dxed with LMS? If yes, RareOne is right, you need to find an expert in LMS.

If not, endo can recur, especially if all the bits of endo were not removed during the hyst. Also since your ovaries are left in, they are still active and you can have functional cysts. Or these could be something else altogether. I would suggest you find a gyn onc in your area and have a consult,

You can search for a gyn oncologist here


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Unread 04-09-2004, 01:10 PM

Hello Everyone,

Sorry for the delayed post, but it's now April and yes they determined that I do have LMS. I came back to this website because I felt I left this tread unfinished.

I begin chemo treatments next week.

Thank you for all the great information and support this website provides.

Unread 04-10-2004, 01:17 PM

Very sorry to hear that you do have LMS. But glad that you've returned here to get the support of the 'sisters.' I don't know what I would have done without them!

Best wishes,
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Unread 05-23-2004, 06:31 PM

Hi Brenda,
Just wanted To let you know that you are not alone. I have not gotten my final results back yet but two pathologist reports came back LMS. My slides are up at Emory University. A sarcoma pathologist is taking a look at them now. There is a support group on Yahoo you might like to join. They are alot of help and pretty much up to date on the latest treatments. Let me know if I can be any help. I have done alot of research on LMS since I found out that I have some type of sarcoma.
Unread 05-24-2004, 08:54 AM

I like the people on the Yahoo list, but you also may be interested in another online support group at www.acor.org There's also information at www.leiomyosarcoma.info
I had surgery for vaginal LMS in 7/02. I had pelvic radiation. Then the LMS spread to my lungs 1/03. I had about a year of chemo (Gemzar and Taxotere). I now have tiny things in my lungs that are being watched by CT scans to see if they are more LMS or something else, like scar tissue.
Please message back if you have any questions about chemo ... or anything. Good luck!
Unread 05-24-2004, 09:14 AM

Hi Rareone,
I am also on both web sites. I am still waiting for the results to come back. This is the hardest . Not knowing. I know my onc said that most likely I won' t need anymore treatment unless Emory university says I do. I thought radiation are something. He said no that the surgery was the answer. Now we just wait and see if the dragon shows up again. I had a ct scan 6 wks ago and so far clear. I do want to go to MD Anderson if I have a reaccurance for a second opinion. The waiting is really taking it 's toll.
Unread 05-24-2004, 10:42 AM

I'm not sure I'd do radiation if I had it to do all over again. It has really affected my bowels.
I sympathize with the waiting. My last CT in March showed a bunch of tiny spots in both lungs. I'm really hoping they are scar tissue, but am very aware that these may be tiny mets. I get my next scans next month at MD Anderson.
I couldn't keep up with both lists, and so, I dropped out of Yahoo. On the ACOR list, I go by my real name, <Oops! Name removed to protect privacy>. I went to the LMS Hugfest near Philadelphia in April and that was great fun.

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